STATEMENT OF FRED FRESE

ON BEHALF OF THE NATIONAL ALLIANCE FOR THE MENTALLY ILL

BEFORE THE SENATE COMMITTEE ON VETERANS’ AFFAIRS

JULY 24, 2002

Chairman Rockefeller, Senator Specter and members of the Committee, I am Fred Frese of Akron, Ohio. I am pleased today to offer the views of the National Alliance for the Mentally Ill (NAMI) on the Department of Veterans Affairs ability to deliver quality mental health care to veterans with severe mental illnesses.

In addition to having served on the NAMI Board and the VA’s Consumer Liaison Committee on Care of Veterans with Serious Mental Illness. I am a veteran myself. In 1966, I had been selected for promotion to the rank of Captain in the U.S. Marine Corps. That is when I was first diagnosed as having the brain disorder schizophrenia – perhaps the most severe and disabling mental illness diagnosis. Since my original diagnosis, I have been treated within the VA medical system, both as an inpatient at the VA hospital in Chillicothe, Ohio, and as an outpatient. Over the years, I have served on numerous advisory panels to the VA on care for the seriously mentally ill, including the VA’s National Psychosis Algorithm.

Who Is NAMI?

NAMI is the nation’s largest national organization, 210,000 members representing persons with serious brain disorders and their families. Through our 1,200 chapters and affiliates in all 50 states, we support education, outreach, advocacy and research on behalf of persons with serious brain disorders such as schizophrenia, manic depressive illness, major depression, severe anxiety disorders and major mental illnesses affecting children.

NAMI has established a NAMI Veterans Committee to assure close attention to veterans mental health issues not only at the national level, but also within each Veterans Integrated Service Network (VISN). The NAMI Veterans Committee includes members in each of the 21 VISNs who advocate for an improved continuum of care for veterans, active military, and dependents with severe mental illness. The membership of the NAMI Veterans Committee consists of persons with mental illness, or family and friends of a person living with a severe mental illness who have an active involvement and interest in issues impacting veterans and our military. NAMI is therefore pleased to offer our views on the programs that serve veterans with severe mental illness.

Mr. Chairman, today I would like to focus my testimony on the continuum of care needed for veterans with severe mental illnesses and the VA’s capacity to provide quality mental health services. For too long, severe mental illness has been shrouded in stigma and discrimination. These illnesses have been misunderstood, feared, hidden, and often ignored by science. Only in the last decade have we seen the first real hope for people with these brain disorders through pioneering research that has uncovered both biological underpinnings for these brain disorders and treatments that work. NAMI applauds the contributions of VA schizophrenia research to the understanding and treatment of these illnesses and supports the development of the VA mental illness research infrastructure through the Mental Illness Research, Education and Clinical Centers (MIRECC). NAMI is also grateful to the efforts of Congress (under your leadership, Senator Specter) to double the funding at the National Institute of Mental Health on mental illness research.

Continuum of Care for Veterans with Severe Mental Illness

In NAMI’s view, an acceptable continuum of care should include the availability and accessibility of physician services, state of the art medications, family education and involvement, inpatient and outpatient care, residential treatment, supported housing, assertive community treatment, psychosocial rehabilitation, peer support, vocational and employment services, and integrated treatment for co-occurring mental illness and substance abuse. The services a veteran requires from this continuum of care at any given time are determined by the fluctuating needs of his or her current clinical condition and should be established in conjunction with his or her treatment team. All services should be available without waiting lists or other barriers to accessing needed treatment and services. To be a comprehensive system of care—the VHA must have the capacity to provide such services.

Mr. Chairman, as you know the VHA’s 21 VISNs were instituted to administer the health services (including mental illness treatment) for VA hospitals and clinics. The idea of these VISNs was to decentralize services, increase efficiency and shift treatment from inpatient care to less costly outpatient settings. There is great variation within and between each VISN in the services it offers to veterans and a VA mental health benefits package can vary from network to network. Further, the VHA is in charge of allocating annual appropriations for each of these 21 VISNs, but does not specifically direct funds to be spent for mental illness treatment and services. Once funding is received, each VISN has authority to allocate resources to hospitals and clinics within their jurisdiction with broad autonomy. NAMI’s concern is that with the flat or declining budgets in each VISN veterans with severe mental illness will not receive the treatment that is needed.

In NAMI’s opinion, the lack of access to treatment and community supports for veterans with severe mental illness is the greatest unmet need of the VA. The FY 2003 Independent Budget for the VA estimates that 454, 598 veterans have a service connected disability due to a mental illness. Of great concern to NAMI are the 130,211 veterans who are service connected for psychosis, 104,593 of whom were treated in the VHA in FY99 for schizophrenia, one of the most disabling brain disorders.

VA Must Expand Evidence Based Services

As part of P.L. 107-135, Congress directed the VA to provide data on how VHA is maintaining capacity for this high priority category of veterans through specialized services. This law mandates, among other provisions, that VA provide data on the number of Mental Health Intensive Case Management (MHICM) teams, the number and type of staff that provide specialized mental health treatment in each facility and Community Based Outpatient Clinic (CBOCs), and the number of CBOC’s that provide mental health treatment and services. NAMI remains hopeful that this data will help define how capacity is being maintained for veterans with severe mental illness. At the same time, we have to recognize that without the VA’s expanding services and programs and providing further resources and funding, the VA’s capacity to serve these high priority veterans will never be met.

Mental Health Intensive Case Management

As members of this Committee know the VHA issued a directive for Mental Health Intensive Case Management (MHICM) back in 2000. MHICM is based on the Substance Abuse and Mental Health Services Administration’s (SAMHSA) standards for assertive community treatment (ACT), which are proven, evidence-based approaches in treating the most severe and persistent mental illnesses. VHA data shows that assertive community treatment is cost-effective as well as effective in treating severe mental illness. However, the SCMI Committee reports that only 1% of all veterans with severe mental illnesses are being treated by a MHICM team. Over 12,000 veterans meet the criteria for MHICM and yet only 2,905 veterans are enrolled. Several networks do not have any teams in place at all.

It is also recognized that very few of the MHICM treatment teams meet the SAMHSA standards outlined in the VA directive and that many of these teams are operating at minimal staffing and are now facing further staff reductions. NAMI strongly recommends that Congress direct VA to dedicate new resources to provide the essential number of new intensive case management teams and to fully staff existing teams so that our nation’s most vulnerable veterans receive appropriate and coordinated care.

Community Based Outpatient Clinics

Many of the VA’s Community Based Outpatient Clinics (CBOCs) are instituted in areas where VA health services are not easily accessible. However, the SCMI Committee reports that out of the 560 CBOCs in operation only 46% offer minimal treatment services for veterans with severe mental illness. NAMI is truly concerned that meaningful community-based capacity is not being developed to treat chronically mentally ill veterans in their communities. NAMI agrees with the SCMI Committee recommendation that VHA should assure that adequate funds are available in each network to implement plans to provide mental health services for high priority veterans. The SCMI Committee has recommended that this be done even if it means requiring mandates for VISNs to reprioritize current funding for services of lower priority veterans and slow further growth of spending on lower priority veterans.

Access to Appropriate Medications

Critical to a continuum of care for veterans with severe mental illness is access to the most appropriate medication. NAMI has closely followed the implementation of the VA’s prescribing guideline for atypical antipsychotic drugs and the subsequent GAO report (GAO-02-579) requested by House Veterans’ Affairs Committee Chairman Chris Smith. The GAO investigated if this guideline has resulted in restricted access to more costly antipsychotic medications and the possible adverse effects this may have on veterans with severe mental illness.

Mr. Chairman, NAMI is pleased that the GAO validated three of our primary concerns surrounding the guideline since it was first issued in July, 2001: (1) that selecting which antipsychotic agent to prescribe is difficult and patient specific, (2) that the most desirable outcomes are very much determined by a clinician’s ability and freedom to properly match the right patient with the right medication, and (3) that while the intent of the overall guideline may be to ensure physician judgment is the driving factor in decisions, there exists a great potential for abuse of the guideline from VISN to VISN and facility to facility.

The GAO report found that "VA’s guideline for prescribing atypical antipsychotic drugs is sound and consistent with published clinical practice guidelines commonly used by public and private health care systems." NAMI is troubled by this assertion and believes that is inconsistent with the current research base. Medical evidence supports the use of an atypical antipsychotic as the medication of first choice, but current guidelines based on this evidence specifically provide for clinician choice among the atypicals (other than clozapine). In NAMI’s view, the VA guidelines go beyond the medical evidence in that they select preferred atypical medications based solely on cost.

NAMI continues to be concerned regarding this policy and questions whether VA would make cost a consideration in the treatment of any other group of service connected veterans. While NAMI supports the VA’s overarching goal to allow physicians to use their best clinical judgement when prescribing atypical antipsychotic for their patients, and while we certainly recognize the VA’s need to husband resources, we believe that it should not come at the cost of veterans with acute needs.

There are numerous studies (including the schizophrenia PORT study) demonstrating that these pharmacy costs are only a small part of the cost of schizophrenia care that can include hospitalization, residential care, supportive services, etc. Pharmacy savings that are achieved through restrictive formularies are often offset by increased clinical care costs elsewhere. Such studies do suggest the importance of looking at the costs of the entire care system for an illness, rather than trying to control costs in just one area.

Unfortunately NAMI was not surprised by the GAO’s finding that numerous VISNs have implemented procedures that "have limited or could restrict access to certain atypical antipsychotic drugs on the VA’s national formulary because of cost considerations." NAMI continues to receive reports from families, consumers receiving services, as well as physicians providing services within the Veterans Health Administration that speak of further restrictions on accessing medications and clinical decisions that are overridden by pharmacy managers.

Mr. Chairman, we recommend that this Committee urge the VA to develop and implement a detailed plan to stop abuses found in the GAO study. The GAO report recommends that the "VA monitor implementation of the guideline by VISNs and facilities to ensure that facilities’ policies and procedures conform with the intent of the guideline by not restricting physicians from prescribing atypical antipsychotic drugs on VA’s formulary." NAMI fully supports this recommendation and believes that, at a minimum, there should be:

a directive forbidding the collection and use of individual physician prescribing profiles

a directive forbidding the introduction of cost-containment criteria into performance reviews

a formal monitoring program to examine all instances in which a less expensive medication is substituted for a more expensive medication to assure that stable patients are not switched

a formal program by which violations of these directives by overzealous pharmacy or behavioral health managers could be reported without fear of reprisal.

Family Education

There is broad research that demonstrates family psychoeducation and support services offered to the families of veterans with severe mental illness should be a part of a continuum of care for veterans. Family psychoeducation includes teaching coping strategies and problem-solving skills to families (and friends) of people with mental illnesses to help them deal more effectively with their ill relative. Family psychoeducation reduces distress, confusion, and anxieties within the family, and can often help the veteran recover. However, family psychoeducation is rarely offered in the VA setting and there are limited incentives to do so. To fill this void, NAMI has partnered with the VA to offer family education through the Family-to-Family Education Program, (a model that has proven effective at improving the experience of families of persons with serious mental illness). Research has shown that this course provides knowledge to families and empowers them to cope with their ill family member and the mental health system in a positive manner, and has lasting effects on the family system.

The VA has 21 health care networks with 163 hospitals, 800+ community-based facilities, and 135 nursing homes and more than 454,000 veterans service connected for a mental illness. This represents a critical mass of individuals who could benefit from family education. The SCMI Committee recommended in it 5th Annual Report to the Under Secretary that VA develop partnerships with community organizations that sponsor self help groups and that they be a specific item required in the annual Network Strategic plan. NAMI further recommends that VA encourage the use of family education and family support services in each Network.

Is there Parity in the VA for Mental Health?

NAMI greatly appreciates the efforts of this Committee and Congress to address the loopholes that have existed in the Capacity Law. Last year, Congress passed the Department of Veterans Affairs Health Care Programs Enhancement Act of 2001 (PL 107-135) which strengthened the VA’s capacity to serve veterans with mental illness; requiring improvements to the current system to ensure that veterans have access to the necessary treatment and services. The new law not only requires the Department to maintain capacity for veterans with mental illness but also to replace lost capacity. The FY 2003 Independent Budget (IB) makes several recommendations for increasing the VHA’s capacity to serve veterans with mental illness. Moreover, the IB recommends that to simply achieve parity with other illnesses, the VA should be devoting an additional $478 million to mental illness spending. NAMI supports the IB recommendation for the VA to meet its responsibility to these high priority veterans. To achieve this goal, Congress should incrementally augment funding for veterans with severe mental illness by $160 million each year, beginning in FY 2003 through FY 2005.

Currently, about 20% of veterans in the VA system are in need of mental health treatment and far below the expectations of the VA’s capacity law. At the same time, funding for mental health has declined by 8% over the past five years (adjusted for inflation that decline in spending increases to 23%). While the VA reports that they have maintained capacity for veterans with severe mental illness, many advocates argue that the VA has not due to the high need of expanded services, decreased staffing levels, and budget levels that are not adjusted for inflation.

Further, the VA’s funding model, the Veterans Equitable Resource Allocation (VERA) system also provides disincentives for providing mental health treatment. VERA under-funds the cost of providing services to veterans with severe mental illness by 20%. In FY 2000, an additional $498 million was needed to make the VERA allocation equal to the costs of its mental health cohorts. NAMI strongly supports the SCMI Committee’s recommendation that the VHA ensure that the funding model is cost neutral for care of veterans with severe mental illnesses.

Research

Even though the VA has made genuine progress in recent years in funding for psychiatric research, such research remains disproportionate to the utilization of mental illness treatment services by veterans. Veterans with mental illness account for approximately 25% of all veterans receiving treatment within the VA system. Despite this fact, VA resources devoted to research has lagged far behind those dedicated to other disorders.

For FY 2003, NAMI urges Congress to support the recommendation of the Independent Budget and Friends of VA Medical Care and Health Research to increase the overall VA research budget by $89 million. Psychiatric research dedicated to chronic mental illness, substance abuse and PTSD has remained relatively flat for last 15 years, despite the fact that the number of patients in the VA system receiving mental illness treatment has grown. Research is one of the VA’s top missions and NAMI is pleased that the VHA is taking steps to increase the number of Mental Illness Research, Education and Clinical Center (MIRECCs), centers designed to serve as infrastructure support for mental illness research. The MIRECCs are a tremendous resource for improving the efficacy of mental health services and improving the outcomes of veterans living with severe and persistent mental illnesses. Mr. Chairman, NAMI appreciates the efforts of Senator Specter and yourself to urge your Senate colleagues on the VA-HUD Appropriations Subcommittee to increase VA’s medical and prosthetic research program in FY 2003.

Lost Capacity for Substance Abuse Treatment

There has been a tremendous decline in substance abuse services. Since FY 1996 the number of veterans treated has declined by 14% and funding for services has declined by more than 50% despite evidence that substance abuse disorders are increasing across the nation.

Further, in 1999 Congress passed the Veterans Millennium Health Care and Benefits Act (P.L. 106-117) mandating that by FY 2000 VHA increase funding for both substance abuse and PTSD by at least $15 million dollars each year. To date, VHA has yet to meet that mandate.

NAMI supports the recommendation of the SCMI Committee "that assertive management action needs to be taken to reverse the ongoing erosion of access to specialized substance abuse services in VHA. This action needs to restore services to the 1996 levels mandated in the Capacity Provisions of the Eligibility Reform legislation."

Co-Occurring Disorders

National studies commissioned by the federal government estimate that 10 – 12 million Americans have co-occurring mental and addictive disorders. The prevailing research confirms that integrated treatment for co-occurring disorders is much more effective than attempting to treat these illnesses separately. In NAMI’s view, the research clearly demonstrates that providing treatment and interventions for mental illness and addictive disorders simultaneously, at the same treatment site, and with cross-trained staff is more effective than sequential treatment (treat one disorder first, then the other) or parallel treatment (in which two different treatment providers at separate locations use separate treatment plans to treat each condition separately but at the same time).

NAMI supports the research being done in the MIRECCs to improve the health services for patients who have co-occurring mental and addictive disorders. For example, the VISN 1 MIRECC has concluded that emphasis should be placed on integrated treatment, and that attention to a veteran’s multiple disorders produces better outcomes. The VA needs to continue to develop innovative programs and appropriately train staff to help veterans living with a severe mental illness and an addictive disorder.

Conclusion

Mr. Chairman, NAMI appreciates your dedication to veterans with severe mental illness and your sponsorship of legislation to further improve and expand the provision of specialized mental health services to veterans. Our nation’s veterans deserve the best treatment, including access to the highest quality care, supports and services. Veterans with severe mental illness should be afforded the same resources as other high priority veterans, including needed community based supports and access to state of the art medications. Thank you for the opportunity to share NAMI’s views on these important issues.